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Positive and interesting ME experience with an NHS consultant

Discussion in 'General ME/CFS Discussion' started by Sasha, Aug 20, 2013.

  1. peggy-sue


    I've not been referred to one single consultant. I was under the impression that while it used to be the receptionist's job to stop you seeing a gp, you can now see a gp - but it is their job (now) to prevent you from seeing a consultant...

    But I am delighted to hear you had a good time with one, Sasha!
    Sasha likes this.
  2. ukxmrv

    ukxmrv Senior Member

    [quote="Sasha, post: 379920, member: 381"

    Thanks! If you ran the NHS and could get immunologists/IFCs trying things out, what things would you want them to try? What should we be asking for?[/quote]

    It's the old postcode lottery again. If patients aren't talking to one another then we don't know what services others are getting.

    I have an example but to preserve the confidentiality of the patient I can't say too much. This patient are under the care of a UK NHS Immunologist and has received a full work up of antibodies to various things plus investigations for things like IM deficiencies. I had to pay for my own antibody testing as my local ID consultant says our local hospital doesn't do them. Yet another hospital in the UK does (as my friend found out) and her deficiencies are being taken seriously. Discussions are under way and things like IVIG are being mentioned. I paid for my own IVIG.

    Had to pay for my own TNF-a tests, plus NK cells activity. It is possible to have TNF-a tested in the UK but once again all of my local hospitals were said not to do it. Another patient I know has had the test in the UK NHS hospital.

    My local hospital can test for CD4 activity but this is only available to HIV/AIDS patients.

    There is a clinic that does tilt table testing but my doctor will not refer me to that clinic and I am battling at the moment.

    There is a local ID consultant who will prescribe antivirals to their PRIVATE patients who pay for tests but not to their NHS patients - even of they pay for the private testing.

    Before NICE I was able to use my private NK cells test results to get a NHS prescription for Immunovir but after NICE this was refused.

    Prof Mowbray who used to work at St Mary's has retired and his VP1 test for enteroviri is no longer available on the NHS. St Mary's was happy to prescribe the early antiviral Amantadine plus other experimental treatments. However as new viruses are being found like HHV6 they no longer keep up with testing and treatment. That is apart from their HIV/AIDS wing.

    My now private ex-NHS Immunologist won't work there any longer due to their failure to provide labs with the tests and to support his treatment options.

    My other NHS Consultant was hounded out of the system and forced to take early retirement as they wouldn't let him provide the treatment options he wanted to do.

    Dr Kerr had a list of treatments he wanted to trial on patients and a dream of an actual clinic and lab. We all know what happened to him.

    The list could go on and on. I'd like my old NHS doctors back and allowed to test and prescribe how they see fit. For those who have retired I'd like to see others trained in their place and given the funds to do proper RCT's into tests and treatments. Prof Mowbray was a good example of someone who developed a test and then at least tried to use the limited drugs of the time to treat patients.
    nomad and taniaaust1 like this.
  3. beaker

    beaker ME/cfs 1986

    Sad thing is ( and to note, I'm in the US and have seen 3 of the well known CFS specialists ) after close to 27 years of this illness , I often find myself thankful for crumbs. My expectations are extremely low.
  4. Esther12

    Esther12 Senior Member

    I've had a couple of medical staff say something like this, normally after an appointment where I've been a bit bemused by the respectful way that they talk to me. While thinking of ME like this does seem to led to patients being treated better, I'm not really comfortable with anyone being convinced ME is anything, yet. I always end up feeling really uncomfortable around doctors who seem to think that they know more than they can. Psycho-social 'assumptions' may be especially harmful, but the problems they've caused have left me very pro-honest-ignorance in doctors.
    peggy-sue and Valentijn like this.
  5. lastgasp

    lastgasp Guest

    The exact specialism doesn't always mean much by itself. My local "fatigue"/CFS clinic is based in and fronted by immunologists, but they're job - how they see it - is to do the arbitrary tests to exclude you (they likely see anyone with Oxford-esque "unexplained fatigue") from having a biomedical immune disease, and recommend a "training" programme of GET, which they were doing even before the first GET study (by Sharpe IIRC?). People becoming disabled and requesting support with social services or testing for non-diagnostic abnormalities is a horrific unreasonableness to them.

    For years they had a web page stating that CFS has "no abnormalities", can be caused by a marriage breakup, is pretty much all about "stress" and deconditioning (though a few people have viral infection of muscle, but not enough to contraindicate GET). After an "asessment" if you report that GET or just trying to keep going (as naturally they don't recommend resting for severe cases as they automatically assume everyone's been spending weeks in bed from the start!) is not working or worse, they simply have no more interest and you're written off as an impossible psych patient. Most pwME take a dim view of them except the local support group the committe of which is stuffed full of people who think they can do a "deal" with anyone and everone.

    I sometimes wish I'd gotten sick ten years earliert then I could have had a chance at getting IVIG, or amantadine which I'd not heard of before.

    Now the situation is that you could be have late stage progressive ME but you'll have to buy your own best hope from an internet phramacy unless you have pockets deep enough to see a prvate doc.
    nomad, Valentijn and Sasha like this.
  6. Sasha

    Sasha Fine, thank you


    Really interesting post. I wonder what the exact mechanism is that is stopping these things being tried. Is it a budgetary issue? Is it a medico-legal issue? Is it the NICE guidelines? Is it an attitude towards risk?
  7. ukxmrv

    ukxmrv Senior Member

    This was a death blow for some local services but things has been going badly for some time previous. The CBT and GET crowd got most of the money. Some existing ME doctors lost their clinics but many others had already lost theirs or retired / died.

    Health Minister Jacqui Smith announced on Monday that £8.5m would be made available for services specifically designed for people with ME.

    This will include establishing centres of expertise across the country and satellite multidisciplinary community teams to develop services within primary care to support GP's and other health professionals.

    Money will also be made available for research, and for education and training for health professions.
  8. Firestormm


    Cornwall England
    Outside of reading any research, a clinicians knowledge will surely be biased by the patients' he/she sees, no? So for patient A seeing an engaged immunologist, said doctor might run X number of tests; but same doctor seeing patient B with the same diagnosis - but perhaps different history or different presentation - might not run same tests or have same conversation.

    There are immunologists attached to some specialist services for ME - does this mean ME is a disorder of the immune system? Does the attachment of a psychiatrist or psychologist mean ME is a mental disorder? Does having a neurology specialist mean ME is a disorder of the nervous system? No. No. And No.

    I'm with you Esther. I like the 'don't know' answers and a certain frankness when admitting they wish they did have an answer but simply do not. Wish they could offer a treatment - but don't.

    The NHS and it's specialist services - for ME and other diseases - operates as a large filter system to my mind. You see a general practitioner - or many in your lifetime - and each tries (well not all of them) to chip away at what is presented. Referrals to specialists might offer alternate explanations that do lead to better treatment that relieves aspects of the poor health. You might because of a referral discover an alternate diagnosis when treated explains your symptoms better than ME and it's treatment - has done up until then.

    You are being filtered. And you can only be filtered if you keep engaging with the NHS. And that battle is hard going when you are not very well. But apparently it can be hard for doctors too.

    Check this out:
    A Letter to Patients With Chronic Disease
    Sasha likes this.

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